The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

CDC's head of CFS research Dr. Beth Unger saidat last month's Chronic Fatigue SyndromeAdvisory Committee meeting(http://bit.ly/1jchoOE) that she couldn't figureout how to measure post-exertional malaise(PEM) - the hallmark of ME -and thus believesproblems would ensue if PEM is a mandatorysymptom.

"My concern about making post-exertional malaise an absolute criteria for diagnosis is if you don't have a consistent, validated way of measuring it that clinicians can use easily, it's big barrier,"

Unger explained at the meeting.

A few minutes later, when committee memberDonna Pearson asked again about PEM beingincluded in the criteria, Unger replied:

"I think everybody agrees that it's very characteristic and a very important symptom, and clinicians will tell you that they can recognize it, they can illicit this information from patients, but to make that quantifiable and to make it easily implementable is another question...."

What?

Several researchers haveshown how to measure PEM.

Cardiac pulmonary testing used by Dr. ChrisSnell is one way, gene expression testingdevised by Drs. Alan and Kathleen Light isanother, comprehensive patient history is yetanother, and using a pedometer like the Fitbitwould also work.

Dr. Jose Montoya conducted VO2 max studies(http://bit.ly/1mwqOUn) with patients on theantiviral Valcyte to determine if their exercisetolerance improved on the antiviral.

Unger's familiar with all of this.

In fact, Unger is one of the authors of a 2012paper: "Minimum data elements for researchreports on CFS" (http://bit.ly/1k3f8o7) in whichthe authors discuss how to measure PEM:

"As post-exertional malaise is a key symptom ofall CFS case definitions, it would be appropriateto measure the extent of activity and how suchactivity might result in symptoms of fatigue andmalaise....

Light et al. (2009) found patients with CFSdemonstrated increases after exercise thatreliably exceeded responses of control subjectsin mRNA for genes receptors that can detectmuscle produced metabolites, genes that areessential for sympathetic nervous systemprocesses, and immune function genes.

The researchers concluded that CFS patientsmight have enhanced sensory signal for fatiguethat is increased after exercise.

Activity, or in work performed is generallyquantified in terms of energy used, i.e., caloricexpenditure.

Because this is difficult to measure duringactivity, total oxygen consumption whichincreases in a similar fashion, is typically usedin its place.

"Sometimes represented as METs or metabolicequivalents, oxygen consumption may beassessed directly using cardiopulmonaryexercise testing with measured gas exchange(Milani et al., 2006), or estimated from heartrate or other indicators of effort such as timeand/or distance travelled.

Assessment of effort is critical when exercise isused as a physiological stressor to elicitsymptoms in CFS patients or for assessmentsof functional capacity as part of clinical trials.

Heart rate as a percentage of age-predictedmaximum is the most recognized indicator ofsubject effort for both maximal and submaximalexercise protocols.

However, the maximal heart rate response toexercise varies widely in the general population(Balady et al., 2010) and has been shown to beblunted in some subjects with CFS (e.g.,VanNess et al., 2003) and also in fibromyalgia(Ribeiro et al., 2011).

"As an alternative to heart rate, the peakrespiratory exchange ratio (RER) isacknowledged as the most valid and reliablegauge of subject effort (Balady et al., 2010).

Because it can only be obtained fromventilatory expired gas analysis, RER may notbe available in all exercise studies.

Similarly, submaximal exercise protocols do notprovide for the measurement of peak RER.

In such instances selecting alternativemeasures that can accurately assess effortboth within and across subjects is particularlyimportant."

In addition, in Table 2 in the paper, the authorscite actigraphy (http://bit.ly/1vXZVKl) andpedometers for activity assessments.

Thus, Unger knows how to measure PEM.

So why is CDC trying to bury PEM?

After all, PEM is the most important symptom ofthe disease - and PEM distinguishes ME patientsfrom people diagnosed with CFS who in realityare just depressed.

But maybe that's the point:

To lump bona fide ME patients in with thedepressed.

That way you don't get meaningful data ortreatment, and the band plays on.

Every time I think CDC can't get moredevious, the agency surprises me.

First, Unger nixed a two-day exercise test(http://bit.ly/VGKDPg) in favor of a one-daytest, even though Dr. Chris Snell has shown PEMisn't apparent under the second day of testing.

And now Unger can't figure how to measurePEM.

If Unger is hung up a "consistent, validated way"of measuring PEM, she only has herself to blamefor not having done a two-day exercise testafter all these years.

Leaving off PEM in the definition is like omitting elevated blood sugar in diabetes or a depressed CD4 count in AIDS.

It's insanity.

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~*HHS's mission is to redefine ME/CFS with yetanother broad, erroneous case definition, whichwill include countless people who do not haveME/CFS, so they can recommend CBT, GET, andanti-depressants, and so they can bury thescientific, biomedical evidence of ME/CFS*.~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

We previously reported that an intraperitoneal (i.p.) injection ofsynthetic double-stranded RNA, polyriboinosinic:polyribocytidylic acid(poly-I:C), produced prolonged fatigue in rats, which might serve as amodel for chronic fatigue syndrome. The poly-I:C-induced fatigue wasassociated with serotonin transporter (5-HTT) overexpression in theprefrontal cortex (PFC), a brain region that has been suggested to becritical for fatigue sensation. In the present study, we demonstratedthat microglial activation in the PFC was important forpoly-I:C-induced fatigue in rats, as pretreatment with minocycline, aninhibitor of microglial activation, prevented the decrease in runningwheel activity. Poly-I:C injection increased the microglialinterleukin (IL)-1β expression in the PFC. An intracerebroventricular(i.c.v.) injection of IL-1β neutralising antibody limited thepoly-I:C-induced decrease in activity, whereas IL-1β (i.c.v.) reducedthe activity in a dose-dependent manner. 5-HTT expression was enhancedby IL-1β in primary cultured astrocytes but not in microglia. Poly-I:Cinjection (i.p.) caused an increase in 5-HTT expression in astrocytesin the PFC of the rat, which was inhibited by pretreatment withminocycline (i.p.) and rat recombinant IL-1 receptor antagonist(i.c.v.). Poly-I:C injection (i.p.) led to a breakdown of theblood–brain barrier and enhanced Toll-like receptor 3 signaling in thebrain. Furthermore, direct application of poly-I:C enhanced IL-1βexpression in primary microglia. We therefore propose thatpoly-I:C-induced microglial activation, which may be at least partlycaused by a direct action of poly-I:C, enhances IL-1β expression.Then, IL-1β induces 5-HTT expression in astrocytes, resulting in theimmunologically induced fatigue.

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